A MyFibroTeam Member
Sending soft hugs 🤗 and prayers 🙏🙏🙏
My fibro has been terrible, I had a nerve burn a few months ago and I am worse now. The muscle pain and joint pain are getting to the point that I don't go anywhere but Drs. Appt. anymore. Pain meds are the only thing that will take the edge off along with muscle relaxers. The longer I have this the worse it gets. Feel like I am just pissed off anymore!
Facebook group about ULDN or LDN Is called NOPE non-opiate pain relief https://m.facebook.com/groups/1593950197487522/...
I have to tell you I’ve had Fibro since 2011 officially, unofficially 2007. 5 years ago I had major neck surgery for cancer. Since that surgery I’ve been in a constant flare. Way worse then before surgery. So I’ve done it all trying to relieve the pain. Pain management said nothing could help with neck pain because of location no nerve block could be done. So about 2 months ago I tried Topikal salve 1000mg (I bought highest dose it’s a CBD/Hemp product no THC so no physical active component)) on my neck IT HELPED! When nothing else (I’ve tried medicated creams and lidocaine 5% patches helped to take edge off for a bit). But I also have been trying Ketamine (low dose need to get from compounding pharmacy with dr. Prescription I had to tell my pain management dr about it) and I believe that is working too. My zapping morning pains are about 80% controlled. It does not help with stiffness. Ketamine dose I started on was extremely low 10’g but it did nothing then they told me 40mg and it knocked me on my butt. So I am currently taking 20mg 3x a day to avoid ass kicking. I seen UCLA dr and he said usually 80-100mg is a starting dose. Pharmacy said 59mg. But if you are sensitive start slow. Only downside is I pay out of pocket $98 a month cuz insurance doesn’t pay compounding. I did try ULDN (ultra low dose naltrexone because I’m on opioid medicine if not ask your dr about LDN low dose naltrexone do your research and sho your dr. In case u have dr. Like mine who never heard of it. There is a ULDN group on Facebook they have a lot of info. ULDN did helped at one point but I tried diluting regular dose (just cut in 1/4 and dilute with x amount of water to avoid paying $100 from compounding pharmacy ) but after a few months it stopped working. So taking a break for now. I’ve tried it all over the years, acupuncture (didn’t work because I’m on opioids), various creams and potions, lidocaine 5% patches cut in pieces to put all over body does help take edge off. I recommend it. But top ones that actually help is CBD salve and ketamine and ULDN from compounding pharmacy. CBD salve that I’ve tried (there are a million out there but seen this company on Spectrum news. Topikal salve 1000mg with Emu oil (emu penetrates skin the best but read about the Endocannabinoid system just like realities and nervous system) https://topikalcbd.com/product/1000-mg-cbd-emu-...
I have a Intrathecal Pain Pump but I had gotten for back pain, joint pain, etc... the pump is mostly good for nerve pain, it has me a tad but not for any spine, joint, muscle issues and certainly not with my Fibromyalgia, actually my Rheumatologist told me the Morphine in the pump could be making my Fibromyalgia worse so he said I’m pretty much damned if I do and damned if I don’t that I’ll never been pain free because all of my other issues which wasn’t a surprise to me. But we had asked if it would help for more than nerve and we were told yes and when the pump started not working as well is when we got told it was for nerve pain, which I’m not sure if I would’ve gotten it if we’d been told that from the beginning. Think long and hard before you jump that hurdle, it’s not easy, I’ve gone through withdrawals before, it’s an upkeep for sure.
Maybe I will try black seed oil. Thanks.
Sorry I can't help you with that I'm allergic to morphine they have other medications I'm sure that they could do but seriously I'm tired of putting these chemicals in my body I wish I could find something natural for the pain if anybody has the don't tell me you're not going to take a pain pill to stop this s*** because you know what yes you will I never thought I'd be on that I've been looking annesley for stuff that would stop the pain a friend of mine told me about black seed oil I'm going to try that and I'll let you guys know if it works or not
My son had one for back pain. He had problems. To my knowledge, it is for specific areas. Not all over pain. Think long and hard before doing that. Good luck!